Newly diagnosed, saying hi!

Hello all. After a year of referrals, dead ends and wrong turns I have finally had APS diagnosed by a lovely rheumatologist in Kent. She actually got quite excitable as the chorea I have is quite rare, apparently! I am also now being tested for lupus. Meanwhile, she said the hematologist will almost certainly start me on warfarin when I see her this week. Unfortunately I will have to stop taking Naproxen, which is the only thing that really helps my arthritis pain.

Has anyone else had experience of this and are there safe alternatives? Paracetamol really doesn't help!

Look forward to getting to know you all ?

18 Replies

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  • Hi and welcome, this is a great place to land, please do have a good read of the charity website which holds great information, also books and things. hughes-syndrome.org/ Getting an actual diagnosis does make life an awful lot easier. MaryF

  • Thanks MaryF!

  • I also want to welcome you to our site.

    Mary has introduced you to the website where almost everything can be found.

    I have several of the books about APS but I prefer one special written by Kay Thackray; "Sticky Blood explained". She has got APS herself and she has written two books about how it is to live with this disease and a lot of the symptoms. The one I have mentioned is the first one. It meant a lot to me as I live in Sweden and here 10 years ago we did not know anything about APS. I have the two in pocket.

    I have been diagnosed by the antibodies found in my blood 13 years ago. I have been on warfarin since 2011 and selftest since 2012. Warfarin has meant a lot to me. With it we can live a normal life.

    Hope you will stay here and there are also our fantastic members out there who are willing to help and answer your questions.

    It is very good that you have got a diagnose. Now the important thing is to get an APS-specialist and I guess you have alreadey found her. When you are anticoagulated your can feel safer and live a good Life.

    Best wishes from Kerstin in Stockholm

  • Hello and welcome.

    I fully agree with the advice that my two colleagues, Mary & Kerstin, have given you.

    Best wishes from Somerset.

    Dave

  • Once decoagulated your systemic inflammation may go down. In which case your arthritis pain may also go down -- maybe to the point where Tylenol works.

    I cheated for years taking both warfarin AND Naprosyn. Yes, I was a bad patient. Postponed the hip replacement for 10 years, but my heart a fib got worse. I did have my hip replaced in Nov of 2013. The new hip is totally pain free.

    So . . . Am I sorry I didn't have the surgery sooner? Well . . . Hip replacements last 10-20 years. Had I replaced it in 2004 when the surgery was first recommended, I might have been looking for an additional replacement by now. And 2nd replacements never work as well as firsts.

    so . . . ?

  • Hi, I use Plaquenil. It has helped me so greatly for the joint pain. I have APS and SLE. My 14 year old daughter has APS not SLE but since she has a lot of joint pain she's on Plaquenil too and she can now exercise! Hope this helps you. Stay well. Lisa

  • Thank you everybody! I will try warfarin only for a while and keep plaquenil as a backup ?

  • Hi, So glad you have found a good rheumatologist in Kent, I had a very good Rheumatologist at QEQM in Kent, but sadly he left, the one who has replaced him awful and sceptical of Professor Hughes original diagnosis, aghhh. So I was wondering if you could tell me the name of your Rheumatologist?, and I could see if she comes to Margate.

    I have been self testing on Warfarin for a few years now, and find the higher INR I feel clearer, and mostly headache free, all the very best

  • Hi gingersmum! Yes I saw this rheumatologist at QEQM (small world!). Her name is Dr De Lord. Highly recommend :-) Did you have to buy the self test equipment yourself? So exciting to know someone on here so close to me!

  • sounds like you hit a home run here Mini and welcome - the plaquenil will be of help , just give it time when you decide to go with it .

  • Thanks jetx3! I don't think its too much of a coincidence that I recently switched to a new GP (female), whose wonderful secretary (female) made sure I was referred to the lead rheumatologist (female) and lead haematologist (female) for this area. Just saying ...!

  • Hi,

    Glad you have some you can trust. Whereabouts in Kent are you?

  • Hi , I'm in Cliffsend (near sunny Ramsgate!). Why do you ask? Are you Kent, too?

  • No not now, I used to live in Rainham. But have since moved to Sunny South Wales. Rheumatologist here is very patchy

  • Hi minnieme63 - Plaquenil is actually a standard treatment now for APS (along with quite a few other conditions) so you should not hold it in reserve. It will help in a number of ways not just with your pain. Guys would put you on it so I hope your lovely new APS lady does the same.

    Great you have found a new team you can trust and have faith in, it make such a difference.

    Please let Kate at the HSF charity know your specialists name so she can contact her and ask her permission to put her on our list of approved specialists. You can reach her by sending a PM to KateH.

  • Oh thank you APsnotFab! I will definitely ask for the Plaquenil, then! It would be nice to start feeling "normal" again! I have my first anti coag clinic on Tuesday, where I get to watch a video and get started on the Warfarin 😊 I'll check the approved list and contact Kate if need be xxx

  • A quick update... Having spent the last 48 hours in terrible pain, I decided to ring the rheumatologist's secretary for advice on pain relief as a precursor to getting an appointment with the doctor tomorrow. I was told the rheumy has discharged me! I only saw her once (for the diagnosis)! And my first visit to the anti-coag clinic two days ago did not fill me with confidence as the nurse who will be dealing with me had not heard of APS! I can't cope much longer with getting up at 2am because the pain is too unbearable. So I will be up and ready for the 8am gp appointment lottery!

  • ....and then! GP tells me Plaquenil can only be prescribed by rheumy! You couldn't make it up. So she is going to make some calls for me and meanwhile I have a prescription for codeine. Oh joy 😑

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